What is MS?
Perusing MultipleSclerosis.net, my eye wanders to a heading at the top of the page that asks ‘What is MS?” and I immediately thought ‘now that’s the million dollar question!’ Beyond being the unexplained autoimmune disease, there is so much more that we know that can answer this question.
What is MS? It is the life altering phrase ‘you have MS,’ spoken by my doctor, snatching the chance to ever be ‘normal’ again because that mythical normal is constantly shifting and will never return.
What is MS? It is the constant companion that never leaves the room. Yes, my MS may be quiet and behaving at the moment, but it is still lurking in the dark corners, waiting to act out when it is least expected. MS definitely is never far from my thoughts.
What is MS? It is one heck of an inconvenience for everyone else who lives with me in addition to my own vexation of living with MS. It means abruptly changing plans if I am too tired. It can also mean having to make restroom stops every 45 minutes when we travel. I know my husband exercises great refrain from asking ‘again?’
What is MS? It is too many bottles of drugs lined up for the daily doses and was the squatter tenant of a shelf full of injectable disease modifying drugs living in my refrigerator when I was taking shots to control the progression of my MS.
What is MS? It is one very costly disease to manage, even with excellent private insurance. Between the drugs and the doctor appointments and all the extra supplies or equipment we might require, we have to have deep pockets or be willing to go in debt to maintain the status quo of living with MS
What is MS? It is the catalyst that forced me outside of my own needs to see the larger MS community and the unmet areas that I might help with and various ways to serve.
What is MS? Frightening to those us who have it, but it is especially intimidating to our family and friends who struggle to understand what we go through and frustrating because they can’t make it better.
Yes, MS is an autoimmune disorder that affects our central nervous system, creating havoc with our brain and spinal column in unpredictable ways, but as I’ve noted, it is also so much more. MS is a MiSerable disease that impacts us on so many levels and it is easy to see why there is no one right answer for ‘What is MS?’
With the millions of people worldwide who live with this disease, ‘What is MS?’ is no longer the million dollar question – it will be worth billions to the researchers who finally unlocks the question and hands us the answer as well as a cure. The costs - physically and emotionally, as well as financially - continue to mount as the number of people living with MS continues to grow.
Tell me, what is MS to you? I would love to hear your thoughts.
Wishing you well,
Do you ever experience MS bloat?